Star Wars: A New Hope was released when I was 19 years old & I've been hooked on the series ever since. What I have found in the intervening years is that the Jedi philosophies of Star Wars have become a useful analogy for my life, particularly since my son was diagnosed with Asperger's Syndrome- hence "Life in the New Republic".

Monday, April 30, 2007

Disablism in action...

Today's post is my contribution to the May 1st "Blogging Against Disablism Day" (follow the "Disablism" link above or click the colourful logo in the sidebar for more info). I have been running up against Disableism- predjudice against those perceived as disabled- since the early 1970's, when I was in my early teens & started working at our local United Cerebral Palsy's summer day camp. In my mid-teens it became more personal. My family discovered that I had subluxing kneecaps, a genetic condition, & I began many years of surgeries, crutches, canes, 7 years in a wheelchair, (for reasons beyond just the knee problems) & ultimately lifelong arthritis from it. I remember back then people asking me if I'd broken my leg, when they saw me on crutches, & as time went by their breezy assumption that I had something "fixable" became more annoying than comforting.

Fastforward to 2001, the year we discovered that our 5-year old son had severe developmental delays, which were diagnosed a year later as Asperger's Syndrome (an Autism Spectrum Disorder). Over the past 5 years since his ASD diagnosis, Brendan has also been diagnosed with Obsessive Compulsive Disorder (OCD) & Tourettes Syndrome. The kinds of disableism that Brendan faces are different than those I did (& still do to a certain extent) face- he is not as readily recognised as a person with a significant difference, unless he's ticcing or having a public meltdown due to sensory overload. The barriers he faces are not those of "stairs but no elevator" but those of a more subtle type. Sights, sounds, & smells that most people may not notice or even find pleasant can be overwhelming to him. Some have OCD associations that produce tics- twirling or loud, explosive noises, or full body spasms. Many of the barriers Brendan faces are educational. He does not write fluidly & finds even typing not to be a fluent interface for putting his words/work down on paper, so we've been trying volice-activated software to see if this will help him. Brendan is working on pragmatic speech with his speech therapist so that social interactions will have fewer barriers, & with his occupational therapist he's working on motor co-ordination & planning, & relaxation techniques that he can use when overwhelmed by sensory or OCD overload. He takes 3 different medications to help control the OCD & tics, & sees a psychologist regularly for cognitive/behavioural therapy so that he can do & be the best he can be. We are very fortunate that his school (a private, alternative school) is progressive & works well with our district to provide an optimum educational situation for him. His teachers like him & want the best for him. From reading other blogs of parents with autistic kids, I know that we've found a rare & wonderful situation for our kid, & we're already nervous about what we'll do in 3 years when he graduates from this school & moves on to high school. We are also very fortunate to be connected with a church community that has allowed us to expand our (& Brendan's) social connexions in the world while maintaining a safe environment for him. We have been part of this church for many years (pre-dating Brendan) & have shared our journey with him & his neurological differences every step of the way. He's fully integrated into the Sunday School (we were his first teachers, then weaned him onto other adults :) & has friends young & old at church.

Where Brendan runs up against disablism the most is, of course, in public & when interacting with people he's never met before. His tics often take people by surprise & they don't know what to make of them. When feeling comfortable, Brendan's been known to clue people in ("I have Tourettes, in case you were wondering.") & we are delighted by his self-advocacy. We also know (& worry) that he is more vulnerable to bullying because of his tics & social difficulties. Bullying is a significant &, although common, extreme manifestation of disablism. Bullying takes the range of what could be "normal" behaviours & narrows them to only those acceptable by a certain group. We do a lot of talking & problem-solving with Brendan when it comes to the possibilty of bullying. The last thing we want is for him to become a victim. The thing about being in public with Brendan is that we can't always change the things that give him sensory overload or trigger the OCD, so we have had to modify how much we actually interact with "public", & how we interact, over the years. In a way, it was a lot easier when he was little- people don't think twice about a tantrumming 3-year-old in a store, nor do they wonder if he's tantrumming because he's autistic (at that point, even we didn't know...). However, an 11-year-old having a meltdown in public is very different. It's not only embarassing for him, but people fear "aggression" & worry about "violence" before they really understand what is causing it. As a result, we have become extremely sensitive to signs of overload from Brendan & take steps to remove him from the stimulus before it becomes a problem. We also plan any trips out of the house, whether they be to the grocery store or across the country, very carefully & with his daily rhythms in mind. Perhaps this is where Brendan can most be considered "disabled". He just can't take part in the sorts of activities expected of kids his age, & although he's doing a beautiful job of learning about what he can & can't handle, & what to do about it, he still needs a lot of help.

Perhaps the most painful incidence of Disablism we've faced so far was recently handed to us by Brendan's paternal grandparents. They don't see him more than 3 times a year, since they live about 5 hours away part of the year & in Florida in the winter. We have done our best to keep them apprised of his progress, & also let them them know about the current difficulties he's having before they come to visit or we visit them, with the idea of making the visit go more smoothly. Charlie & I had really thought that they were "on board" with Brendan's autism & accepting it as well as could be expected. But last week we received a letter from them accusing us of overstating his difficulties & "needs", & also accusing us of rudeness during our last couple of visits because we'd chosen to remove him from situations a bit early because he was becoming stressed (once he was in full meltdown & we barely got him to the car...). The main evidence that shows we're not being honest with them turns out to be our up-coming, long-awaited family trip to Japan (!). In their minds, we'd have to be crazy to take "a child like that" (with Brendan's difficulties) to Japan. So, in their world, "a child like that" doesn't have the right to travel to a place he's wanted to go since he was 4 years old. No matter that he's been studying the japanese language for 2 years... And, of course, there's no recognition of everything we do to tilt the scales in our favour when travelling with him- planning our days carefully for sufficient down-time, choosing quiet places to stay, helping him cognitively focus in advance on the places we'll visit so that he'll have points of reference. There are, of course, a lot of other, long-term, family-type issues going on in the background of these accusations (which we are consulting my therapist for help in dealing with), but I can't escape the disablism inherent in the assumptions being made about Brendan & autistic people by their attitude.

Attitudes, of course, are what disablism is all about. It's pre-judging people based, not on factual information, but on what is believed to be true about people. One of the ironies of having an autistic child these days is that the loudest voices in the media these days about autism, by a group claiming to "speak" for autism, refer to autistic children as "poisoned" by mercury or vaccines, "train-wrecks", & dwell on the general horribleness of dealing with autism. They perpetrate essentially false images of people with autism, supposedly in the name of advocacy (!), but what they are really advocating for (& fundraising for) is a "cure" so that autism will be eradicated from the face of the earth- a breathtakingly callous way of talking about something that is central to the lives of so many people. Even the language of recent legislation in the US supposedly designed to help autistic people & their families is called the "Combating Autism Act", which brings to mind destruction rather than assistance... The reality for my family & many others, & for many autistic adults, is far different than the stereotypes. We love out neurodiverse son for who & what he is. We give him everything we can to help him blossom into the person he will become (as we would have whether or not he were autistic), but we love his autistic self very much. I believe that his autism is an essential part of who he is. We don't want a cure- what we want is for the attitudes of society to change so that there will be fewer artificial barriers to his achieving his dreams. That's really what disablism is- artificial barriers to progress for anyone. I remember vividly, when I needed a wheelchair to get around (& to play basketball & "run" races in), wondering what made me a "disabled" person- the wheels, or the flight of stairs that kept me out. I can ask a similar question for my son, too. Is he disabled because of his neurological differences, or because society has put particular barriers in his way?

The good news is that things have changed a lot since I first became aware if disability rights issues. I have seen attitudes toward the disabled shift, kerb cuts become the norm. It's not nearly what it should be, but change has happened, through the hard work of activists. Awareness of autism is shifting, too. The moderate & neurodiverse perspectives are being heard, & the sheer numbers (not an epidemic, as some would declare, but better diagnostics & less stigma) of kids identified as autistic or pdd-nos are making a once scary & isolating diagnosis much more common. I am surrounded by other parents, now, who are wrestling with their school districts & IEP's, comparing notes on pediatric neurologists, & sharing references for good child psychologists. :). And, drumroll please, we are taking our autistic kid to Japan this June. Just our small contribution to countering disablism... :) Let's all do our best today (& every day, of course) to be aware of the attitudes & predjudices that surround us, & do our best to let it be known that we can transcend these barriers, & that the world is always a better place when we do.

Grandparents come from a different time, a different generation. So much has changed from their childhoods to our childrens'. Some for the better, some for the worst. I hope they will come around, for Brendan's sake. Regardless, keep up the good work, and have fun in Japan, brave soul!

I think it's great that you folks are moving forward with the trip and with the voice-recognition software for Brendan. The fact that his difficulties with writing are being acknowledged is a very good thing; though plenty of autistic people are more attuned to writing/typing, some go the opposite way, and it doesn't make them any less autistic. It just means people are individuals with individual skill sets that can be affected by all kinds of factors and variables.

You're taking Brendan to Japan in June---and we're taking our son and his wheels to Italy in July. (And we're meeting the grandparents, aunts, uncles and cousins there.) So strange that we're blazing trails, real and metaphorical, just by doing ordinary family stuff. Safe and happy travel to you.

About Me

This blog account is now shared by Lisa/Jedi & son Brendan, who has begun his own blog (see links). Lisa is 59, full-time mom (to afore-mentioned Brendan) & part-time fibre-artist. Brendan is 21 and in college. We have been studying Japanese language since the summer of 2005 &amp. We travel to Japan to visit the friends we've made there every 2 years. Our family is rounded-out by Charlie (aka Dad), who is a very good sport about everything :) & loves to sail.